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My mil (86) is in nursing care since April and not doing well. She went from independent living in Nov of last year to two hospital stays and a rapid decline. Her last hospitalization in Feb she was rushed to ER as they thought she was having a stroke. We were with her and fully expected her to pass that night she was in such bad shape. She didn't and they discovered the next day she was actually having multiple seizures. We suspect she'd been having them frequently.


She is now bed bound, fully incontinent (has been since December). She is on about 8 medications, including three to prevent the seizures (others are for high blood pressure and other issues). She was recently evaluated for dementia as she has many signs including hallucinations and they suspect several forms. She is losing the ability to speak.


Today my husband went to visit her and said she said hello to him, but she was doing very poorly. They are now assessing her for a UTI and will treat with antibiotics. This is the 4th UTI she has had in as many months. In fact, she's had several infections.


My MIL is in a very good facility and self paying. One of the staff called my husband after the psych eval and he told her that he knew his mom would not improve and he did not want to try to fix anything else with more meds, but now he seems to think they'll treat the UTI and she will improve. Perhaps she will, but for what? To lie in a bed? The only thing keeping her alive is all of the medications.


At what point should hospice be considered? We have been through 10 years of watching slow declines in parents. My mother ended up on hospice with lewy-body and lasted 7 months in nursing, but she had no other problems and no medications - she also never wanted to end up in nursing (my grandmother lasted 7 years in nursing with dementia) - she wanted an assisted death - so I had some peace when she did go. My fil was sick for years on numerous medications and lingered in the hospital for five months. My husband was diagnosed a year ago at 59 with a rare illness for which he is getting treatment and this is taking a toll.


If it were my mom I would switch her to hospice now. I'm a bit surprised my husband wants to give his mother more medication given her state. I feel he is now in denial about next steps. To say I am weary that this has taken over our lives so fully is an understatement. The moving and care of my mil (she neglected many, many things business-wise we have also had to deal with) has been three very long years, following the seven with my mother and fil.


It is my husband's decision what happens next, but I find myself very angry that this is continuing. I know it is out of my hands on a spiritual level, but how can someone so ill keep holding on?

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I just deleted my post because it seems I was a little late with responding.

Sending you hugs and support from Italy! I just went through the very same thing with my Dad who passed one month ago. You are in a state of limbo and nothing else seems to matter. What made it even more complicated for me is that my mother is ambulatory and was in And out of hospitals and rehab’s at the same time as my dad. I was predominately the sole caregiver for both. My daily montra that I’d like to share is, “one day at a time”. You are not alone. <hugs>
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orlando101 Jul 2019
Thank you! That is really tough to be sole caregiver. One day at a time is really all you can do, right? My husband has gone through this alone (with me though :-) since 2015 (my journey started in 2010 with my mom's third fall), from one parent to the next from health crisis, illness, hospital stay, hospice, closing a home of 55 years, moving, one two, three times. We've been in this latest "limbo" now since December 2018. When we spent Christmas eve and day last year visiting skilled nursing, I never would have thought we'd still be in limbo in July with a huge amount of ups and downs in between (I thought assisted living would have been the next step, not just a less than two month step). I have officially surrendered though as of just recently. I have zero control over what happens next, so it really is in a higher powers hand's. Serenity to you - Who know, maybe I'll be visiting Italy this time next year. But for now, one day at a time ~
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Denial could play a big factor in the decision making process. I say this now because I just went and through it with my Dad. It’s real! I can tell you from our experience that the doctors in the hospital suggested palliative care followed by hospice. Dad had everyone on a rollercoaster because he kept rebounding. Eventually we had a family meeting with the doctor and Dad was sent home on hospice (per his wishes). Our family was totally in denial.

May I suggest reading about the signs of death and what to watch for on a hospice website if you are able? Looking back, once one actually sees what death looks like, you’ll see That medication such as morphine to keep them comfortable is the most humane thing to do. Sending you warm wishes and support during this difficult time.
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orlando101 Jul 2019
Thank you. That was helpful to read about the "signs". I don't think there is any denial, unless it's from her. She's shown many of the signs going back almost seven months, especially following the major seizures in the hospital. When my husband visits a few times a week, it's as if it is a social visit for her, except she is prone on a bed and lapses into "stories" about things that didn't happen and dead family members she has seen. Again, this has been going on for some time. Then she falls asleep. I went through hospice with my mom and fil, so am familiar with it. My mother talked openly about death and dying and her wishes of not lying in a bed in a nursing home for years well before she started failing. That made it far easier for me and my siblings when things changed. My mil never did this and even now when frequently lucid never mentions any thoughts or wishes about the end. I personally think it would make things easier for my husband.
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This brings me to tears. My heart aches for you and your husband. You are in my prayers for Mercy. Take a minute to yourself when you can.
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Orlando, HUGS!!!

MayThe Lord God almighty grant you and your husband grieving mercies and strength during this difficult journey.

I understand that hearing is the last to go, so maybe reminiscing about happy times will help all of you get through this without more trauma.

HUGS!!!
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Hugs to you and your husband. My thoughts are with both of you as you walk this path.
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Orlando, how are you and your family doing?

Is hospice helping your MIL remain comfortable and taken care of?

Hugs!
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orlando101 Jul 2019
Thank you very much for checking. Yes, my MIL is getting the extra attention from hospice and is as comfortable as can be. It gets more and more difficult for my husband to visit. (I try, but it brings back so many memories of visiting my mom and my grandmother in nursing homes that are not easy). It's a world suspended between living and dying, as anyone who has been through it knows and difficult to see people still living, but completely disengaged from the world. My mil seems to have a strong will to keep going. When she was in the hospital the Dr. told my husband (after assuring him that it was very much time for hospice) that he thought my mil would not make it through the night as they could no longer draw blood and her kidneys levels were almost zero. She's still here, though. Except for eating (she is having more trouble swallowing now) she lies in bed and mostly sleeps. It's been calmer, but we both start when the phones rings and know at one point we will need to face the end and respond to all of the things that come next. It's a strange limbo we are in.
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A hospice's mission is to help people get ready to die -- in my opinion to 'accelerate' their passing … and we just don't want to cut short a closing life by even a matter of days. ..... 
That's the reason why your husband wants to give his mother more medication, sensing that her life is running short! 
-- and I wouldn't blame him!
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worriedinCali Jul 2019
factually, your opinion is wrong. Hospice doesn’t speed up the process. Think about it—what do they have to gain by making people die faster? The longer the patient lives, the more money hospice makes. SMDH
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What does your mother in law want in respect to her care or end of life care? Does she have a life directive? This is not your mother so you are right-- the decisions are out of your hands. What you are asking (whether medications should be stopped) is not hospice but euthanasia. Increasingly "hospice pallative care" is really euthanasia - or if the patient has requested stopping medications, assisted suicide. Assisted suicide is legal in just a few states, and euthanasia is not legal in the USA. This "hospice palliative care" can also include starvation and dehydration, with increasing morphine and other sedatives until the patient passes on. I have witnessed this "death with dignity" and there is NOTHING dignified about it at all. Would YOU want to die starved and dried out? Would you want your loved one to suffer in this way? You say you are angry that your mother in law is being treated for her many conditions and you seem to want to fast track her out of this life. Again, its not up to you and to avoid jeopardizing your marriage, you should just let your husband make decisions for his mother, or better yet, let HER make her own health decisions if she is able.
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orlando101 Jun 2019
There were some very helpful answers here. THIS is not one. You clearly DID NOT read any of my replies to others, SHE cannot make these decisions herself as I pointed out over and over again. I never once suggested it was MY decision and having been through this with my fil and mil, with no one else to help, my husband and I are very bonded and secure in how we deal with this - together. But suffering also includes being given 10+ medications a day and then put through invasive treatments over and over again at a hospital when you are extremely frail and bedridden. My husband and I have been through hospice twice: once with my mom and then end of life hospice with my fil, which was extremely difficult. We have witnessed the suffering AND we have three times been in the hospital in the past few months with my mil (probably 30x over the past 5 years between my mother, fil and mil) and were told she would not make it. It is very, very difficult to process this, begin to grieve and then have to do it over again and then know there is no real recovery, only a delay. My mil is on hospice. She had made her wishes known in writing, to an extent, about advanced directive, etc. She is unable to make those decisions for herself now as vascular dementia is getting much worse. I'm quite aware of the laws in the U.S. I know people have a knee jerk response to express THEIR opinions. If you don't take the time to read the full story, then don't just fill in reply so you can make YOUR judgmental opinion known. And stop using the CAPS.
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Some people can't step to the other side until they are alone...

I know a few people who let go of this world to go to their Heaven when loved ones were not looking...

My mom was "speaking" to me when I went home for a few minutes. I was watering the trees she had given me. I heard her tell me to hurry back....

As I walked into the house, the nurse said out loud the time of her departure...

I was there all night, and went home to get a breath of air...She wasn't alone, my brother was there, but I stepped out for too long.
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jrwalk Aug 2019
I don't know what your faith beliefs are but mine tells me God orders our steps and if you were supposed to be with her you would have. There are times when God's timing prevents this. Feel no guilt. You are not in control. The post is correct there are some who will not leave until they are alone.
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Palliative care and hospice are good. As my FIL would always tell me these bodies are not meant to live forever.. Sad, but true.. Keep you loved ones as comfortable as possible, pain free as possible, and content as possible..Milkshakes, treats, and goodies as long as they want them...

It is hard, but I am still learning to let go...

This is a good forum.. Thank you for allowing our thoughts to be heard.
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Update: Hospice evaluation was decided on yesterday. My mil started treatment for a uti on Saturday, Sunday we were called twice. Once to start iv fluids as she was ill and vomiting and then after that we were informed she was being taken to the hospital with issues for kidneys.

My husband met with hospice this morning. Biggest issue is vascular dementia which seems to be progressing quite quickly (from speaking in full sentences last month to losing that ability almost fully). Was a very, very difficult decision for my husband to put her on hospice even though he knows it's the right decision - it's been really tough for us to do this all alone. I so very much appreciate all of the support here. That and the advise was invaluable. Much peace to you all. So many have been through so much.
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anonymous811792 Jun 2019
My thoughts are with you and your husband. My mother's gone through very-very similar issues. She had bladder cancer removed last year which stopped the UTIs. But is in same condition as your mil. It's draining on the parties involved mentally and physically, and spiritually.
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I was talking to my MIL's neighbor the other day. She showed me her paperwork (I think it was freaking her out a bit) from hospice. She is now on palliative care, and will move to hospice care when she is closer to the end, but it is all under the hospice umbrella. I think you should contact hospice now, as they deal with this all the time and will have a clue which decisions are contributing to her quality of life and which are just prolonging it. There is no reason not to consult with hospice. It isn't like calling the vet to have your cat put down.
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It does seem like the end is near.
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The fact she is holding on, is maybe the answer. She isn't ready to go. Does your husband sense this? I would be loving towards him, he doesn't really understand himself. But, it is his mom. I am grateful my husband always left the decisions for my mom to me .
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orlando101 Jun 2019
No she hasn't been ready, clearly. Perhaps for him. It's been so hard on him as his sister cannot help at all - even to talk to - as she has early onset dementia. It's been a really tough several years. I agree - my husband left the decisions about my mom to me and my siblings, I am leaving this to him. He said this a.m. that putting her in hospice was perhaps the hardest thing he's ever done, but they did tell him it was the perfect time.
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I have my dad on hospice and only wished I would have known about it when I was taking care of my mom5 years ago. It has been nice the nurse comes two times a week, a pastor stops by once every couple weeks, we have someone that comes in and helps with cleaning twice a week. We have slowly started taking him off any medications not detrimental to survival. Hospice pays for the ones that he was diagnosis send for hospice care. It has been so great having extra support this time around. Do check into it.
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I can tell you that the start of my mother’s dying, or the beginning stages were the hallucinations..everything you are saying above, looks to me like she is dying. Hospice needs to be brought in 6 months before they die. When you also said she is losing the ability to speak, that reminded me of my mother dying. I did what your husband did, all because I did not know the stages of dying at all. Never seen it before, so I brought my mother into hospice waaaay tooo late. She could have been comfortable for longer than 1 day. Problem is, SNF tells me on the night hospice was coming to get mom, that she was “dying for 3 months now because she was never improving” - like they were yelling at me about this, then why didn’t they tell me this? I guess I would not believe it either, because I didn’t know what dying looks like, even though she, at times, seemed to be improving and I would keep trying to keep up with each issue that popped up, just like your husband is doing. When you start to see MIL agitated alot, and definitely not eating anymore or eating very little, even the things she loves, I would bring hospice in right away and have them evaluate her. They know for sure when someone is dying. But, if your husband doesn’t bring in hospice, which by the way, would not be a benefit to your MIL as hospice is a beautiful place, do not worry, this is not going to last much longer.
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orlando101 Jun 2019
She is on hospice now. My mother had hallucinations for years, but almost constantly two years before she died and every single symptom of lewy-body but no one brought it up until too late. My husband saw his father die over the four months, the last several days in hospice with agitation, etc. so he knows what it is like. I think as children we all some denial even at the end. I know I did with my mom. To have her in hospice/nursing home seven months and then to be in shock when you hear that she passed one morning - you think you've prepared yourself, but I don't know if you can. All my siblings felt the same way. I'm praying for peace for my mil and husband.
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I have had 3 loved ones who were unable to voice their end-of-life care choices. I knew them well enough to know what those choices were, and two of the three had signed advance directive statements before they became incapacitated. It was still the hardest decision in my life to step up as advocate for them.

Each had told me they didn’t want to survive in a vegetative state or close to it. For my mother and also for my life partner of 16 years, their brain function was minimal. For all three loved ones, brain damage had left them unable to drink, eat, walk, or communicate.

In each case, I brought hospice in once I knew they would not improve. The hospice teams. educated me on the process and observed experience of dying. It is a fact that good palliative care — keeping the loved one comfortable and managing pain — enhances quality of life for the patient and her or his family. There is a dignity in this approach that totally changes the experience to emphasize relationships and spirituality.

I made very difficult choice to withdraw non-essential treatments (like replacing a pacemaker, which required surgery). For my life partner, I chose to withdraw feeding when it was clear his body was shutting down. He was spared the discomfort and indignity of a feeding tube, and in that way his passing was as close to his wishes as it could be. I kept vigil at his bedside until he passed quietly. It was profoundly moving, and four years on, I have an abiding peacefulness when I reflect upon it.

Best and peaceful wishes to you as you face the experience that confirms our humanity in the most loving of ways.
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Hospice is not about taking away their needed medications. It’s about making them comfortable until the end of their life. Hospice can be the final chapter in caring for someone who is at the end. But it by no means takes away their medications making them suffer in misery. One they stop advancing and start regressing is when hospice comes in. Occasionally some do get off of hospice when they improve. But for the majority, they are being made comfortable through the final stages of their life. Contact your doctor or a hospice facility to talk over whether someone qualifies for hospice. Let them do their job. You are an advocate for your loved one. Use wisdom in your judgements.
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Everyone is different on how they feel about their parent. Some of us are stronger and some of us are not. Some are ready to let them go and some of us are not. My mom had 3 strokes with the last one being the big one that paralyzed one side and took her ability to speak coherently and to even open her eyes. I was the one that had to make the final decision on letting her go. But I called in my brother and my mom's brother to get their opinions. Especially my uncles.

She told me she was scared of dying and it broke my heart to see her the way she was that last week. She died in 7 days after they took her off of all food and water. They were just giving her morphine and an anti anxiety med to keep her out of it. But she had a strong will and she was still restless and would say a few words here and there which absolutely broke my heart and made me doubt my decision even now when she passed back in 2015.

Don't push your husband to make the decision you want him to make. It has to be his own. It's the guilt of a child to that parent that's going to haunt him if he feels he's made the wrong one. It's so hard to let go of that parent.

Some of us are stronger than others....let him make his own decision with the doctors and medical staff. Otherwise, if you push him to a decision that he's not ready for, he may never forgive you.
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orlando101 Jun 2019
Thank you. I agree, I know my one brother could not even barely see my mom once she was completely bedridden. I never once faulted him for that. We are all different.

It's all entirely my husband's decision and he just met with hospice. Said it was the hardest decision he ever made. He is alone in this except for me, as his only sibling has dementia so he does look to me for support. I would never, ever, push him and in fact sending him some answers from this thread, really, really helped him and both of us (knowing they would not deny all medications and his mom would not suffer more from that was key).

I think intuitively when I heard she had another uti, I was scared and knew that we needed to get more help for her and not just keep treating these things and having her lie in a bed. As it turns out, she ended up in the hospital after they started treatment for the uti and it's where she is now as they were concerned about kidneys. Vascular dementia is what is taking her.

It is so hard not to feel guilt, even when we do the right thing. How does one prepare to see loved one's die? I guess it's been happening forever, and we survive, but it sure isn't easy. Thanks for your reply and very sorry about the losses you've been though.
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When she passes, Hospice, hospital, doctors, etc will leave you alone as well
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drooney Jun 2019
My hospice ( I am a volunteer) does several follow-ups after death of a client. We also welcome relatives of deceased to our care givers support group.
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If she was in the hospital ICU, staff would in all likelihood subtly to let her pass.
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cetude Jun 2019
NOT TRUE! Letting them "subtly pass" without a Do Not Resuscitate (DNR) order can get them in a great deal of trouble. Unless there is a DNR..if full code everything will be done to keep her alive by law including intubation and chest compressions.
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Definately encourage a consult with Hospice. What they bring to the situation is immeassurable. The team will work with the people she has now at her facility. I had to make the choice to involve Hospice with my own mother, so all I can say is that it stopped the hoop jumping that we put ours loved one through near the end of life. Thank you for supporting your husband during this time. It's a tough place to be.
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Actually, a UTI can cause very serious problems that can include hallucinations and appearance of sudden dementia and inability to function to any degree. A friend shared info with me years ago about the behavior changes in her own mom during a facility stay that proved invaluable when other people would say their parent suddenly went downhill in a facility. I cannot tell you how often they would call back and confirm there was, indeed, a UTI.

You said you moved to care for the MIL - do you still have your own home that you want to return to? Or your move was permanent to where she is located? If you have a home somewhere else, you can relocate her to be closer to your own home. If you're there permanent, things will probably continue as they have.

Understandably, you are both tired after caring for so many in the past and currently. However, your husband has to see this through in his way. I call it making decisions I can live with. That's what he will be doing and will need your support. Your personal feeling of anger is probably not anger at all - just being tied. Continue the walk with him.
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SandyVZ Jun 2019
I found out about the UTI and bizarre behavior about 1.5 years ago. Mom woke up on a Saturday morn, and I thought she had a bad dream. Then I realized it wasn't a dream, she seemed to be experiencing psychiatric symptoms. Monday morn, the doctors office said it sounds like UTI, bring her in. She was given a normal course of antibiotics for UTI, but behavior didn't clear up right away. Between me and the general practitioner, we finally got her in to see psychiatrist. Everyone had real long waiting list. He put her on a real low dose of Seroquel (1/2 of lowest dose pill.) Took about 6 weeks, and she finally came back to normal.

First thing I had thought, was Alzheimers, dementia. But the onset was so sudden. Glad we got it squared away. Now I just get an order for a UA every now and then, and we keep a closer eye on it. They say elderly don't get the typical symptoms of UTI. She does have some dementia, but that episode was very abnormal.

Glad to know there are others out here that now about this. Thanks
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I've just recently gone thru this exact thing. Actually my mothers funeral is this Thursday. My mom was done, she was tired and panicky with that bi pap mask. I wanted to let her go quickly. But my sister wanted to try this and try that and just drug my mother's extreme pain and misery out for 4-5 more days than necessary. So, my answer is to let her go as quickly and painlessly as possible unless the doctor feels there is some chance of her improving enough to enjoy some more of her life by continuing treatment. That's my 2 cents. Blessings to your family.
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shad250 Jun 2019
I'm so sorry for your loss
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This is my experience with hospice for my mother in 2010 and my father in 2014. They worked with my parent's doctor regarding the medications. For the most part, both my parents kept their medication plans. However, hospice would only pay for certain ones.
It is my understanding that hospice cannot force anyone to discontinue any medications; they just will not pay for some. Since both my parents passed on within two weeks of acquiring their services, I do not think we had needed to get the RX filled that hospice would not pay for.
Their approach was that they were there to assist us and by calling them, it did not mean that my parents were going to pass on right away. They gave us a kit of medications to be kept in the refrigerator and went over instructions on each one. (I took notes.) We called them if we had questions. My mother passed on in the hospital and my father, in his house. When he passed, we called hospice and they came and helped with having his body removed and procedures to take.
Hospice was WONDERFUL. It was so helpful to have a person to guide you that is not emotionally involved and is thinking logically.
My opinion is to call hospice and see if you and your husband can work with them.
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Knowledge is power. Why not get an evaluation from hospice? Then, there is something concrete for your husband to consider. I was in a situation with my mom much like you. I sought a hospice evaluation for her because her condition had deteriorated to the point that I believed that her care in the nursing home wouldn't be enough and would contribute to her decline. Hospice would supplement and therefore improve her one-on-one care because the nursing home paradigm doesn't provide enough for those who need the care mom did. It was a difficult choice but I knew it was the right one. If somehow she improved with added care, she could "graduate" hospice, but that didn't happen. However, I have the comfort of knowing that she was lovingly cared for (which the nursing home couldn't/wouldn't have done alone) and she never developed a bedsore. Her last three and a half months were made much more tolerable.
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A doctor ordered hospice for us.
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You don't get to decide, there are guidelines now for Hospice. The person has to be evaluated; bedridden and incontinent are not enough to be eligible for Hospice.

My DH was denied until 3 days before he passed away. I told the nurses that God would see that DH got Hospice when needed. On Monday he was ineligible, they came on Wednesday and that was the first day he was unable to stand. I still don't know why they came on Wednesday, but I will be forever thankful as his last 3 days went so much easier with assistance.

If you deny the medications, you can be held responsible. I had my father sign a living will and had it notarized, basically stating that he didn't want to be kept alive artificially.
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My dad 94, has been under hospice care for two years. He gets a drug for hallucinations he has almost constantly now and treatment for utis when needed. Hospice means caring for someone at the end of their life. It doesn't mean letting them suffer until they die!

My dad is slowly slipping away with heart failure, can no longer walk, bedridden mostly except wheelchair to meals at the care center. He also is no longer lucid, the hallucinations have taken over his mind, and he rambles about events that never took place but seem so real to him. He no longer realizes mom and one of my brothers are dead and gone many years ago, and wonders why they don't visit.

I think our local hospice is doing a great job making my dad's last weeks and months comfortable ones.
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I wish people would become more informed about hospice services and the wishes of your loved ones.
And dehydration is a very peaceful way to die. Feeding tubes are not used anymore when someone is dying because it overloads the system and makes the dying process painful.
Do you really want to drag out your loved one’s dying process and cause them more discomfort?
When my beloved, late partner was dying of cancer they made me promise I would not let them be in pain and prolong their life because I wanted them around so when the hospice nurse very honestly asked me can I give my partner morphine every 15 minutes until they died by the end of the night or it could be dragged out another week or two.)
I opted to do the morphine every 15 minutes(actually a relative stepped in). I could never let a loved linger because of my inability to let them go😢
Please everyone, talk with your loved ones and really think, what is the kindest thing to do??? Dying with dignity is not the worst thing....

Love to you all!
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